Managing Epilepsy Well Managing Epilepsy Well (MEW) Research Network(MEW) Research Network

Review by:Review by: Robert Fraser Ph.D., Robert Fraser Ph.D., CRCCRC

Erica Johnson, Ph.D., Erica Johnson, Ph.D., CRCCRC

Consumer Generated Self-Management for Adults with EpilepsyConsumer Generated Self-Management for Adults with Epilepsy

(DiIorio et al., 2010)(DiIorio et al., 2010)

(Fraser et al., in press)(Fraser et al., in press)

Funding for epilepsy self-management evolved Funding for epilepsy self-management evolved from recommendations from two national from recommendations from two national conferences, conferences, Living With Epilepsy 1Living With Epilepsy 1 (1993) and (1993) and Living With Epilepsy 2Living With Epilepsy 2 (2003), co-sponsored by (2003), co-sponsored by the Epilepsy Foundation, CDC, etc.the Epilepsy Foundation, CDC, etc.

These national meetings highlighted the dearth These national meetings highlighted the dearth of evidence-based programs to support self-of evidence-based programs to support self-management in epilepsy vs. widely available management in epilepsy vs. widely available programs for those with arthritis, diabetes, or programs for those with arthritis, diabetes, or asthma.asthma.

LWE-II Priority LWE-II Priority RecommendationsRecommendations

in Self-Managementin Self-Management Enhancing the Behavioral and Social Enhancing the Behavioral and Social

Science Research relating to epilepsy Science Research relating to epilepsy self-management.self-management.

Ensure that programs recognize the Ensure that programs recognize the spectrum of epilepsy and tailor content spectrum of epilepsy and tailor content (e.g., well-controlled seizures, refractory (e.g., well-controlled seizures, refractory seizures, etc.).seizures, etc.).

CDC translated the recommendations CDC translated the recommendations into an applied research program.into an applied research program.

In 2007, CDC supported the development of In 2007, CDC supported the development of the Managing Epilepsy Well Network.the Managing Epilepsy Well Network.

First Year of Funding:First Year of Funding:Emory – the Coordinating CenterEmory – the Coordinating CenterUniversity of Texas Health Science-HoustonUniversity of Texas Health Science-Houston

Second Year of Funding:Second Year of Funding:University of MichiganUniversity of MichiganUniversity of WashingtonUniversity of Washington

Structures of the MEW Structures of the MEW NetworkNetwork

Four collaborating centers, individual Four collaborating centers, individual research projects and collaborative research projects and collaborative projects.projects.

External partners: External partners: American Epilepsy Society, Epilepsy American Epilepsy Society, Epilepsy Foundation Affiliates, Epilepsy Foundation Affiliates, Epilepsy

Medical Medical Centers, etc.Centers, etc.

Individual research partners:Individual research partners:Baker (U.K.), Thorbecke (Germany), Baker (U.K.), Thorbecke (Germany),

etc. etc. with special expertise.with special expertise.

Mission of the MEW NetworkMission of the MEW Network

““To advance the science related to To advance the science related to epilepsy self-management by epilepsy self-management by facilitating and implementing facilitating and implementing research, conducting research in research, conducting research in collaboration with network and collaboration with network and community partners, and broadly community partners, and broadly disseminating research findings.”disseminating research findings.”

Emory University’s WebEaseEmory University’s WebEase

On-line self-management program, based On-line self-management program, based upon social cognitive theory, the trans-upon social cognitive theory, the trans-theoretical model, and motivational interview.theoretical model, and motivational interview.

Three modules (medication, stress, and sleep) Three modules (medication, stress, and sleep) and My Log (data tracking system).and My Log (data tracking system).

Program rated highly as to content and Program rated highly as to content and navigability in pilot. Pre-test and post-test navigability in pilot. Pre-test and post-test demonstrated improvement as to overall self-demonstrated improvement as to overall self-management, capacity, medication management, capacity, medication adherence, sleep quality, self-efficacy, and adherence, sleep quality, self-efficacy, and social support.social support.

Emory University’s Project Emory University’s Project UpliftUplift

Eight module programs delivered weekly Eight module programs delivered weekly through the Internet or by telephone for through the Internet or by telephone for people with epilepsy wanting to reduce people with epilepsy wanting to reduce depression.depression.

Combination of cognitive behavioral therapy Combination of cognitive behavioral therapy and mindfulness techniques.and mindfulness techniques.

Peer with epilepsy / doctoral student Peer with epilepsy / doctoral student facilitator.facilitator.

Data now being analyzed – Different Data now being analyzed – Different modalities vs. wait list control.modalities vs. wait list control.

University of Texas - University of Texas - HoustonHouston

Socioeconomic Differences in Epilepsy Self-Socioeconomic Differences in Epilepsy Self-Management Management and Its Impact on Treatment Adherence, Health Care and Its Impact on Treatment Adherence, Health Care Use, and Health Outcomes.Use, and Health Outcomes.

Utilizing a co-hort of 450 patients from 2 Utilizing a co-hort of 450 patients from 2 socioeconomically diverse Houston clinical sites.socioeconomically diverse Houston clinical sites.

Four quarterly interviews to obtain longitudinal Four quarterly interviews to obtain longitudinal information on their seizure characteristics, information on their seizure characteristics, knowledge and attitudes about epilepsy, healthcare knowledge and attitudes about epilepsy, healthcare use, and quality of life.use, and quality of life.

Additional medical chart review provides information Additional medical chart review provides information on clinical outcome and medication adherence.on clinical outcome and medication adherence.

University of Texas - University of Texas - HoustonHouston

Evaluation of a Clinic-Based Decision Evaluation of a Clinic-Based Decision Support System.Support System.

Mounted on PDA computer accessed by Mounted on PDA computer accessed by patients and healthcare providers during patients and healthcare providers during clinic visits.clinic visits.

Based upon patients’ epilepsy symptoms, Based upon patients’ epilepsy symptoms, behavior, thoughts and beliefs, provides behavior, thoughts and beliefs, provides information about patients’ self-information about patients’ self-management needs, discussion point management needs, discussion point recommendations, patient management recommendations, patient management goals, and “action plan” suggestions.goals, and “action plan” suggestions.

University of MichiganUniversity of Michigan

Contributing to Managing Epilepsy WellContributing to Managing Epilepsy Well

Phase One:Phase One: Extensive literature review related Extensive literature review related not not only to epilepsy self-management, but self-only to epilepsy self-management, but self-management across diverse disabilities.management across diverse disabilities.

Phase Two:Phase Two: Survey research across 101 key Survey research across 101 key informants who provide or know about informants who provide or know about evaluated interventions to improve the lives evaluated interventions to improve the lives of those with epilepsy. of those with epilepsy.

University of WashingtonUniversity of Washington

Consumer Generated Self-Management for Consumer Generated Self-Management for

Adults with EpilepsyAdults with Epilepsy

Most self-management models involve a Most self-management models involve a

““top down” programmatic approach.top down” programmatic approach.

We were desirous of a consumer-We were desirous of a consumer-

generated intervention model.generated intervention model.

Managing Epilepsy Managing Epilepsy Well: Well:

Needs AssessmentNeeds Assessment Year 1:Year 1:

Evidentiary review to determine seizure, Evidentiary review to determine seizure, health, psychosocial problems, and well-health, psychosocial problems, and well-being variables (prior needs assessments, being variables (prior needs assessments, etc.).etc.).

Focus group methodology (2 patient groups) Focus group methodology (2 patient groups) to confirm items from evidentiary review, to confirm items from evidentiary review, pilot needs assessment survey.pilot needs assessment survey.

Mail survey methodology to collect patient Mail survey methodology to collect patient and provider data. and provider data.

Mail SurveyMail Survey

ProvidersProviders (n = 20; 90+% response rate); (n = 20; 90+% response rate);

PatientsPatients (n = 270) from HMC/UWMC, Swedish, (n = 270) from HMC/UWMC, Swedish, EFNWEFNW

N = 165 surveys returned (61%)N = 165 surveys returned (61%)

Survey methodology important (Dillman et al., Survey methodology important (Dillman et al., 2008):2008): $5 (cash) with physician invitation letter, survey, $5 (cash) with physician invitation letter, survey,

consent, return SASEconsent, return SASE $5 (cash) sent upon receipt of survey & consent$5 (cash) sent upon receipt of survey & consent Hand-addressed & stampedHand-addressed & stamped

Mail SurveyMail Survey Seizure informationSeizure information General health information:General health information:

Perceived well-being; co-morbid conditionsPerceived well-being; co-morbid conditions Mood and anxiety measures (PHQ, GAD)Mood and anxiety measures (PHQ, GAD)

Life problem rating scales for the following domains:Life problem rating scales for the following domains: WorkWork Independent livingIndependent living SocializingSocializing Epilepsy managementEpilepsy management Managing emotions and cognitionManaging emotions and cognition Health and well-beingHealth and well-being Medical careMedical care

Self-management program format, leadership, Self-management program format, leadership, duration, etc.duration, etc.

Demographic informationDemographic information

Outpatient Survey ResultsOutpatient Survey Results Average age = 41 yearsAverage age = 41 years 42% 42% >> college degrees college degrees 43.6% male43.6% male 30.7% employed FT, 15.3% PT30.7% employed FT, 15.3% PT 23.3% receive disability income due to sz’s23.3% receive disability income due to sz’s Average AED’s = 2.1 (range = 1-9)Average AED’s = 2.1 (range = 1-9) 79% reported they have a specific sz type79% reported they have a specific sz type

21.5% reported simple partial sz’s21.5% reported simple partial sz’s 35% reported complex partial sz’s35% reported complex partial sz’s 19% reported secondarily generalized sz’s19% reported secondarily generalized sz’s 44% reported tonic clonic sz’s44% reported tonic clonic sz’s 8.6% reported myoclonic sz’s8.6% reported myoclonic sz’s 30.7% reported absence sz’s30.7% reported absence sz’s 4.9% reported PNES4.9% reported PNES

Seizure FrequencySeizure Frequency 24.5% haven’t had a sz in 2+ yrs24.5% haven’t had a sz in 2+ yrs 33.7% have sz’s once/month33.7% have sz’s once/month 18.4% have sz’s 1-3 times/month18.4% have sz’s 1-3 times/month 11.7% have 1 or more sz’s/week11.7% have 1 or more sz’s/week 6.1% have 1 or more sz’s/day6.1% have 1 or more sz’s/day

Outpatient Survey ResultsOutpatient Survey Results

36.6% endorse 1+ co-morbid medical conditions.36.6% endorse 1+ co-morbid medical conditions. 14.1% endorse 1+ co-morbid neurological 14.1% endorse 1+ co-morbid neurological

conditions.conditions. 4.3% endorse 1+ co-morbid sensory conditions.4.3% endorse 1+ co-morbid sensory conditions. 22.7% endorse 1+ co-morbid emotional/mental 22.7% endorse 1+ co-morbid emotional/mental

health conditions.health conditions. 40.5% have a lifetime hx of depression tx.40.5% have a lifetime hx of depression tx. 20.9% report current depression tx.20.9% report current depression tx. 22.7% have lifetime hx of anxiety tx.22.7% have lifetime hx of anxiety tx. 12.3% report current anxiety tx.12.3% report current anxiety tx.

Outpatient General Survey Outpatient General Survey ResultsResults

Large within group heterogeneity on problem Large within group heterogeneity on problem ratings and the problem ratings are low — ratings and the problem ratings are low — why? why?

Are there more homogenous subgroups?Are there more homogenous subgroups? Depressed, etc.Depressed, etc.

Preliminary analyses targeted predictors of Preliminary analyses targeted predictors of positive well-being:positive well-being: Perceived health scalePerceived health scale Happiness scaleHappiness scale Life satisfaction scaleLife satisfaction scale

Preliminary AnalysesPreliminary Analyses

Best correlates of “adjustment” Best correlates of “adjustment” (health, happiness, life satisfaction):(health, happiness, life satisfaction):

Seizure severitySeizure severity Depression Depression AnxietyAnxiety Income/poverty lineIncome/poverty line EducationEducation Cognitive problemsCognitive problems

Based Upon Multivariate Linear Based Upon Multivariate Linear ProgressionProgression

The best predictor of each adjustment The best predictor of each adjustment domain was the PHQ-9 depression domain was the PHQ-9 depression score alone.score alone.

As mood decreases, so does health, As mood decreases, so does health, happiness, and life satisfaction.happiness, and life satisfaction.

Second best predictor, indications of Second best predictor, indications of cognitive problems, cognitive problems, >> three of seven. three of seven.

Secondary AnalysesSecondary Analyses

How do people with either…How do people with either… probable major depression, orprobable major depression, or self-reported cognitive problemsself-reported cognitive problems

……rate their life problems, relative to people rate their life problems, relative to people without these problems?without these problems?

Probable depression:Probable depression: PHQ-9 > 10.PHQ-9 > 10.

Cognitive problems:Cognitive problems: Agree/strongly agree Agree/strongly agree that alertness, attention, memory, word that alertness, attention, memory, word finding, multitasking, problem solving, finding, multitasking, problem solving, and processing speed are deficient, and processing speed are deficient, >> three of seven.three of seven.

ResultsResults

People with probable major depression People with probable major depression or cognitive problems rate or cognitive problems rate virtually all virtually all aspectsaspects of their life area problems of their life area problems significantly highersignificantly higher than those without. than those without.

Although there are some problem areas Although there are some problem areas that have salience for both groups.that have salience for both groups.

Self-Management Self-Management PreferencesPreferences

In-person individual (49%) or group sessions In-person individual (49%) or group sessions (33%).(33%).

Meet for 1 hour on a weeknight (55%).Meet for 1 hour on a weeknight (55%).

Led by a physician or a professional, plus lay Led by a physician or a professional, plus lay person with epilepsy (55%).person with epilepsy (55%).

Educational + emotional coping strategies Educational + emotional coping strategies (42%).(42%).

Number of sessions, a decided majority Number of sessions, a decided majority << 8 8 sessions (57%). sessions (57%).

MEW Intervention ContentMEW Intervention Content

1.1. Medical Issues and EpilepsyMedical Issues and Epilepsy

2.2. Dealing with Sadness and StressDealing with Sadness and Stress

3.3. Assertive Communication and My DisabilityAssertive Communication and My Disability

4.4. Cognition: Memory and AttentionCognition: Memory and Attention

5.5. Cognition: Information ProcessingCognition: Information Processing

6.6. Increasing Community ParticipationIncreasing Community Participation

7.7. General Health and Well-BeingGeneral Health and Well-Being

8.8. Managing My Medical CareManaging My Medical Care

ImplicationsImplications Interventionists need to consider direct input Interventionists need to consider direct input

from patients/service recipients for tx design.from patients/service recipients for tx design.

Attention to a more challenged or poorly Attention to a more challenged or poorly adjusted subgroup of participants in terms of adjusted subgroup of participants in terms of emotional and cognitive health.emotional and cognitive health.

Self-management programming may need to Self-management programming may need to be more targeted to optimally serve higher-be more targeted to optimally serve higher-need groups (while still serving mainstream need groups (while still serving mainstream group).group).

Address life problem areas within the context Address life problem areas within the context of mood management and coping?of mood management and coping?

MEW Network Collaborative MEW Network Collaborative Project(s) – OngoingProject(s) – Ongoing

Funded by the NIH, Challenge Grant Funded by the NIH, Challenge Grant Initiative, Emory is the coordinating center.Initiative, Emory is the coordinating center.

Utilize Project Uplift materials to Utilize Project Uplift materials to “prevent/reduce depression risk” among “prevent/reduce depression risk” among adults with epilepsy and mild/moderate adults with epilepsy and mild/moderate symptoms.symptoms.

Delivery by telephone or Internet, tested as Delivery by telephone or Internet, tested as to efficacy across the four MEW to efficacy across the four MEW collaborating centers (h = 42 per site).collaborating centers (h = 42 per site).

Self-Management Tool WorkgroupSelf-Management Tool Workgroup